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2 nd fcr day over
A big thank you for all your good wishes and advice, I sailed through second day no reactions at all, now a break till October once again thank you for all your kind words of support.
A big thank you for all your good wishes and advice, I sailed through second day no reactions at all, now a break till October once again thank you for all your kind words of support.
dandelup
in
CLL Support
6 years ago
Completely lost appetite
Hi there I hope everybody is doing well here. Very soon I am going to start my first cycle of FCR. The problem is that there is loss of appetite not due to fear of therapy but due to my progressive CLL.I want to know ,if any had such an experience ,when my symptoms will resolve? Will that happen after
Hi there I hope everybody is doing well here. Very soon I am going to start my first cycle of FCR. The problem is that there is loss of appetite not due to fear of therapy but due to my progressive CLL.I want to know ,if any had such an experience ,when my symptoms will resolve? Will that happen after
MoSamir
in
CLL Support
6 years ago
First dose over
Just had my first day of fcr, had slight blip halfway through got the shivers and for some reason got very emotional don’t ask me why, the nurses reckon it’s the enormity of what your having done to you suddenly hitting me anyway they sorted me out and finished the treatment felt a idiot , apparently
Just had my first day of fcr, had slight blip halfway through got the shivers and for some reason got very emotional don’t ask me why, the nurses reckon it’s the enormity of what your having done to you suddenly hitting me anyway they sorted me out and finished the treatment felt a idiot , apparently
dandelup
in
CLL Support
6 years ago
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Clonal Evolution, mutations and resistance to CLL treatment
When someone is diagnosed with CLL they have at least one clone of B lymphocytes that are growing faster than they should and/or dying less than they should. As a result we are diagnosed with cancer. But the illness may be slow growing, not even needing treatment initially, but may develop to a point
When someone is diagnosed with CLL they have at least one clone of B lymphocytes that are growing faster than they should and/or dying less than they should. As a result we are diagnosed with cancer. But the illness may be slow growing, not even needing treatment initially, but may develop to a point
AdrianUK
in
CLL Support
6 years ago
One year on from FCR - and I feel great
Teachers in the UK return to work this week after our summer holiday. For me, a teacher returning to his 23rd 'Start of the year' this year I am reminded that this time a year ago I was having the last of my 6 cycles of FCR. Since then, I've led my school through an OFSTED inspection, travelled to Italy
Teachers in the UK return to work this week after our summer holiday. For me, a teacher returning to his 23rd 'Start of the year' this year I am reminded that this time a year ago I was having the last of my 6 cycles of FCR. Since then, I've led my school through an OFSTED inspection, travelled to Italy
MattGGibson
in
CLL Support
6 years ago
Just a quick question re fcr
Starting FCR next week I presume I will have a picc line fitted? Just one of the many questions I forgot to ask yesterday at my appointment
Starting FCR next week I presume I will have a picc line fitted? Just one of the many questions I forgot to ask yesterday at my appointment
dandelup
in
CLL Support
6 years ago
Big day update
Now back from hospital I got selected for fcr which I was hoping to avoid, but going to approach it in a positive manor try and keep infection free and look forward to March when it will be finished.
Now back from hospital I got selected for fcr which I was hoping to avoid, but going to approach it in a positive manor try and keep infection free and look forward to March when it will be finished.
dandelup
in
CLL Support
6 years ago
Rituximab infusion
Hi All. I have RA which was being kept under control with biologics, but last year I was diagnosed with Scleritis, a very painful inflammatory eye condition. I have been on steroids and humira, but unfortunately they have not worked to control it. My rheumatologist and ophthalmologist between them have
Hi All. I have RA which was being kept under control with biologics, but last year I was diagnosed with Scleritis, a very painful inflammatory eye condition. I have been on steroids and humira, but unfortunately they have not worked to control it. My rheumatologist and ophthalmologist between them have
Jarden_20
in
NRAS
6 years ago
Rituximab immunology
Morning all, I am on Rituximab and have been on it since 2009, I usually have infusions every 9 to 12 months. I am currently undergoing tests for another condition and in doing that they have established that my immune system has taken a battering. My IGM is <0.20 and my IGG is 5.79. My rheumatologist
Morning all, I am on Rituximab and have been on it since 2009, I usually have infusions every 9 to 12 months. I am currently undergoing tests for another condition and in doing that they have established that my immune system has taken a battering. My IGM is <0.20 and my IGG is 5.79. My rheumatologist
purplecats
in
NRAS
6 years ago
Venetoclax and mouth sores
I have great news. Beginning of July I had a Bone Marrow Biopsy and it came back with NO CLL/SLL I had failed FCR and went on to Venetoclax & Obinutuzumab. Obinutuzumab finished in Feb 2018. I got Dermatomyositis (skin & Muscle) autoimmune disorder shortly after I started Ibrutinib and when it showed
I have great news. Beginning of July I had a Bone Marrow Biopsy and it came back with NO CLL/SLL I had failed FCR and went on to Venetoclax & Obinutuzumab. Obinutuzumab finished in Feb 2018. I got Dermatomyositis (skin & Muscle) autoimmune disorder shortly after I started Ibrutinib and when it showed
Eliotf
in
CLL Support
6 years ago
Two years after stopping Ibrutinib muscle pains getting worse
Two years ago I stopped Flair trial of Ibrutinib and Rituximab and have been doing pretty well since then. However in the last few weeks I have developed muscle pain in my arm (heavy shopping) and now my thigh - due to swimming weirdly to avoid pain in my hip...anyway the pains have continued and even
Two years ago I stopped Flair trial of Ibrutinib and Rituximab and have been doing pretty well since then. However in the last few weeks I have developed muscle pain in my arm (heavy shopping) and now my thigh - due to swimming weirdly to avoid pain in my hip...anyway the pains have continued and even
romarin
in
CLL Support
6 years ago
Update after 3rd FCR!
After 3 rounds of FCR, my doctor said we can go ahead with plan to get BMB in September and hopefully stop treatment! Had no problems during chemo. Port was great to have. Nodes gone, blood work continues to go in right direction. Slightly tired few days after treatments, few days of loss of appetite
After 3 rounds of FCR, my doctor said we can go ahead with plan to get BMB in September and hopefully stop treatment! Had no problems during chemo. Port was great to have. Nodes gone, blood work continues to go in right direction. Slightly tired few days after treatments, few days of loss of appetite
GMa27
in
CLL Support
6 years ago
Ibrutinib in September
Hi ,after just under 2 years remission after FCR , I am now starting ibrutinib in September.Just wondered how long people on here have been taking this?Thanks Martin
Hi ,after just under 2 years remission after FCR , I am now starting ibrutinib in September.Just wondered how long people on here have been taking this?Thanks Martin
Stacky66
in
CLL Support
6 years ago
Response and Survival Rates for FCR and Ibrutinib
Those of you who waded through my post yesterday on clonal evolution will be glad to know this is a much more simple one! I am going to break a statistical rule today but am in good company as the information below is based in part on a table found in the UK CLL 2018 guidelines: https://onlinelibrary.wiley.com
Those of you who waded through my post yesterday on clonal evolution will be glad to know this is a much more simple one! I am going to break a statistical rule today but am in good company as the information below is based in part on a table found in the UK CLL 2018 guidelines: https://onlinelibrary.wiley.com
AdrianUK
in
CLL Support
6 years ago
Deciding on CLL Therapy and When to Treat- ONCLive Video discussion Drs. Wierda, Lamanna, Ma, Davids, Coutre
This has been discussed often- when to start treatment. There are many exceptions and special conditions, but the only agreement is not to treat on White Blood Count. https://youtu.be/A66CR1ubb-c Transcript: William G. Wierda, MD, PhD: So, let’s move on to treatment. We’ll start the discussion,
This has been discussed often- when to start treatment. There are many exceptions and special conditions, but the only agreement is not to treat on White Blood Count. https://youtu.be/A66CR1ubb-c Transcript: William G. Wierda, MD, PhD: So, let’s move on to treatment. We’ll start the discussion,
lankisterguy
Volunteer
in
CLL Support
6 years ago
Rituximab infusion
Hi all, I got a letter yesterday telling me to attend hospital for the first of 2 infusions of Rituximab next Saturday i have read the leaflet but just wondered if any fellow sufferers had anything to offer as am still not totally sure what to expect. Kindest Regards
Hi all, I got a letter yesterday telling me to attend hospital for the first of 2 infusions of Rituximab next Saturday i have read the leaflet but just wondered if any fellow sufferers had anything to offer as am still not totally sure what to expect. Kindest Regards
phil_54
in
NRAS
6 years ago
4 weeks in
Morning ! so. 4 weeks in After Rituximab infusion. Still so so stiff and sore in the mornings. Am on another ‘rescue course’ of steroids to last another 4 weeks as the nurse has said they allow upto 12 weeks for it to start working. Anyone else had experience of how long it takes to start working
Morning ! so. 4 weeks in After Rituximab infusion. Still so so stiff and sore in the mornings. Am on another ‘rescue course’ of steroids to last another 4 weeks as the nurse has said they allow upto 12 weeks for it to start working. Anyone else had experience of how long it takes to start working
Tessthomy
in
NRAS
6 years ago
Effects of long term antibiotics
I have Churg Strauss, currently treated with Rituximab, 5mg Prednisilone, Following a fungal infection in my lungs last winter which had to be treated with very strong antibiotics I am still taking a low dose full time. This inevitably has side effects, noticeably with stomach probs, rushing to the
I have Churg Strauss, currently treated with Rituximab, 5mg Prednisilone, Following a fungal infection in my lungs last winter which had to be treated with very strong antibiotics I am still taking a low dose full time. This inevitably has side effects, noticeably with stomach probs, rushing to the
sarahdollygirl
in
Vasculitis UK
6 years ago
What is the difference between Methotrexate and Rutiximab?
I have CSS and my consultant here in France took me off methotrexate at the beginning of last summer which resulted in the disease re-emerging with a vengance! I have been having Rituximab infusions since November (initially 2, 2 weeks apart, then 6 monthly). What is the difference between Methotrexate
I have CSS and my consultant here in France took me off methotrexate at the beginning of last summer which resulted in the disease re-emerging with a vengance! I have been having Rituximab infusions since November (initially 2, 2 weeks apart, then 6 monthly). What is the difference between Methotrexate
sarahdollygirl
in
Vasculitis UK
6 years ago
FLAIR Study Site List Map / UK CLL Expert Centres
I have received from the organisers of the UK FLAIR trial an updated list of hospitals and doctors running the FLAIR trial, which you can find below or by viewing the following google map where you can easily find your closest site: https://www.google.com/maps/d/viewer?mid=16Jbl8Gd7yUX0mh3JdofRQptO6dY4YwSy
I have received from the organisers of the UK FLAIR trial an updated list of hospitals and doctors running the FLAIR trial, which you can find below or by viewing the following google map where you can easily find your closest site: https://www.google.com/maps/d/viewer?mid=16Jbl8Gd7yUX0mh3JdofRQptO6dY4YwSy
AdrianUK
in
CLL Support
6 years ago
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